MASON CARES RANDOMIZED STUDY: EFFECTS OF A NINE-WEEK STRESS MANAGEMENT PROGRAM INTERVENTION ON CAREGIVER BURDEN SCORES

Abstract OBJECTIVE The Mason CARES study examines the impact of a virtual stress management program (Phase 1) and music intervention (Phase 2) on the stress of family caregivers of older adults with dementia. This study presents Phase 1 findings on 99 participants enrolled in 2022. METHODS Using primary data from 99 participants, we analyzed caregiver stress levels before and immediately after implementation of a 9-week stress management program using Zoom videoconference calls. Caregiver stress was measured using the Zarit Burden Interview (ZBI) score with a range from 0 to 48 (Bédard, 2001). Higher values (ZBI >=17.0) are associated with higher levels of stress. RESULTS Among the 99 caregivers, 49.4% were spouses and 50.6% were non-spouses (e.g., adult children). Mean ZBI scores before and after the 9-week stress busting program intervention across the full sample decreased by 14.7% (from 23.7 to 20.2). Spouses experienced a greater decrease (17.9% from 23.5 to 19.3) in caregiver stress compared to non-spouses (12.1% from 23.9 to 21.0). Reductions in stress levels also occurred for caregivers of older adults with mild cognitive impairment (13.9% from 21.0 to 18.0), moderate dementia (16.5% from 24.1 to 20.1), and advanced dementia (9.7% from 27.7 to 25.0). CONCLUSION Findings show that caregivers had high stress levels at baseline (ZBI score of 17 or more). Spouses reported greater stress improvement compared to non-spouses after the 9-week stress busting program. Also, caregivers of older adults with moderate dementia had greater improvement in stress compared to the mild or advanced dementia sub-groups.


LOSING PERSONHOOD: EXPERIENCES OF INDIVIDUALS CARING FOR A FAMILY MEMBER WITH DEMENTIA
Rachel Carter 1 , Sally Norton 1 , Marian Moskow 2 , Melanie Bobry 1 , Kimberly Van Orden 3 , Kathi Heffner 3 , and Marsha Wittink 1 , 1. University of Rochester, Rochester, New York, United States, 2. University of Rochester School of Nursing,Rochester,New York,United States,3. University of Rochester Medical Center,Rochester,New York,United States Over 11 million people in the United States are providing informal care for a person with dementia (PwD).When providing care, family caregivers for a PwD may find their own sense of personhood becomes lost, impacting their social connectedness.This qualitative study characterizes family caregivers' social connection experiences, goals, barriers, and facilitators.We used a criterion-based purposeful sampling strategy to identify 30 family caregivers for PwD ages 50+ who were lonely (n=20) and not lonely (n=10) according to their UCLA loneliness scale short form scores (not lonely = < 5 and lonely = ≥ 6).We recruited selected participants through the Healthy Aging Research Program (HARP) population study.We then conducted individual, semi-structured interviews with each participant and performed a content analysis on all transcribed interviews, utilizing preset codes based on a theoretical frame and developing novel codes until key themes were identified.Participants reported connections between social connectedness-loneliness, disconnection, and feelings of isolationand the loss or diminishment of their own personhood.When asked about their past and present social activities, the ones caregivers identified as important allowed them to feel connected to others and to themselves, offering either or both: 1) the opportunity to relate to others in ways they could not relate to the PwD; 2) social and emotional engagement that reinforced their sense of personhood.When social activities did not offer either of these, caregivers experienced disconnection.Results indicate potential ways to intervene to mitigate loss of personhood and promote social connectedness in family caregivers.

MASON CARES RANDOMIZED STUDY: EFFECTS OF A NINE-WEEK STRESS MANAGEMENT PROGRAM INTERVENTION ON CAREGIVER BURDEN SCORES
Gilbert Gimm, Shannon Layman, Emily Ihara, Megumi Inoue, and Catherine Tompkins, George Mason University, Fairfax, Virginia, United States OBJECTIVE: The Mason CARES study examines the impact of a virtual stress management program (Phase 1) and music intervention (Phase 2) on the stress of family caregivers of older adults with dementia.This study presents Phase 1 findings on 99 participants enrolled in 2022.METHODS: Using primary data from 99 participants, we analyzed caregiver stress levels before and immediately after implementation of a 9-week stress management program using Zoom videoconference calls.Caregiver stress was measured using the Zarit Burden Interview (ZBI) score with a range from 0 to 48 (Bédard, 2001).Higher values (ZBI >=17.0) are associated with higher levels of stress.RESULTS: Among the 99 caregivers, 49.4% were spouses and 50.6% were non-spouses (e.g., adult children).Mean ZBI scores before and after the 9-week stress busting program intervention across the full sample decreased by 14.7% (from 23.7 to 20.2).Spouses experienced a greater decrease (17.9% from 23.5 to 19.3) in caregiver stress compared to non-spouses (12.1% from 23.9 to 21.0).Reductions in stress levels also occurred for caregivers of older adults with mild cognitive impairment (13.9% from 21.0 to 18.0), moderate dementia (16.5% from 24.1 to 20.1), and advanced dementia (9.7% from 27.7 to 25.0).CONCLUSION: Findings show that caregivers had high stress levels at baseline (ZBI score of 17 or more).Spouses reported greater stress improvement compared to nonspouses after the 9-week stress busting program.Also, caregivers of older adults with moderate dementia had greater improvement in stress compared to the mild or advanced dementia sub-groups.
Abstract citation ID: igad104.0341Black and Hispanic Persons Living with Dementia (PLWD) heavily rely on home healthcare to remain comfortably in their own home, even at the end of life.Despite growth in use of hospice in the U.S., research demonstrates persistent racial differences in utilization of hospice -a key indicator of high-quality end of life care.This is particularly relevant among older Black and Hispanic PLWD who experience additional burdensome interventions at the end of life which often run counter to their goals of care.This study examined perceptions of caregivers to Black and Hispanic PLWD regarding discussions with home healthcare nurses about end-of-life communication and transitions to hospice.We conducted semi-structured interviews with 19 Black and Hispanic family caregivers of PLWD.Interviews were recorded, transcribed, translated and analyzed using conventional content analysis.Results showed that Black and Hispanic caregivers of PLWD do not prioritize aggressive and burdensome care at the end of life, had low expectations of the healthcare system to support their needs and preferences at the end-of-life, and were willing to discuss and accept hospice if discussions were transparent about resources and entitlements; acknowledged the strengths of the PLWD/ caregivers; involved positive and respectful communication with families during a home visit; acknowledged respect for their social communities and home environment; sat down during a home visit and recognized the role of religion at the end-of-life.Implications to improve care include incorporating family caregiver discussions, identify social determinants of health, and address the role of religion in future interventions.

PERSPECTIVES OF CAREGIVERS TO BLACK AND HISPANIC PERSONS LIVING WITH DEMENTIA (PLWD) ABOUT END-OF-LIFE COMMUNICATION
Abstract citation ID: igad104.0342

THE ROLE OF SOCIAL ENTERPRISE ORGANIZATIONS IN SUPPORTING FAMILY CARERS OF OLDER PEOPLE LIVING WITH DEMENTIA
Maria Cheshire-Allen, and Abigail Davies, Swansea University, Swansea, Wales, United Kingdom This paper aims to present findings from a primary qualitative study that explored the role of social enterprise organisations (SEOs) in delivering co-produced support for family carers of older people living with dementia (PLWD).Defined in the UK, as businesses with a social or environmental purpose, SEOs are increasingly recognised as occupying a unique space in the landscape of adult social care delivery.In Wales, devolved legislation requires public bodies to collaborate with SEOs -this provision is intended to create a mixed economy of care with co-produced userled services.To date, however, there is little firm evidence of SEOs delivering co-produced care solutions within the policy framework in Wales, which can be understood to be particularly permissive of SEO involvement, or of how the sector is involved in the delivery of support for family carers of older PLWD.Findings gathered through five focus groups with a purposive sample of family carers, and SEO care providers in South Wales, show how co-produced family carer support programmes are navigated and enacted, as well as how the individual agency of service providers, PLWD, and their carers are involved in these processes.Adopting an ethics of care approach, and utilising reflexive thematic analysis, key themes identified include competition between and within organisations, parochialism, capacity, and organisational barriers.This study highlights implications for policy and practice related to the rhetoric of co-produced support services for family carers, SEOs' views on delivering that support, and family carers' experiences of navigating and receiving SEO-delivered services.

FAMILY CAREGIVING DURING THE COVID-19 PANDEMIC FOR OLDER ADULTS WITH DEMENTIA
Chair: Emily Wiemers Co-Chair: I-Fen Lin Family caregiving plays a crucial role in meeting the care needs of older adults, especially those living with Alzheimer's disease and related dementias (ADRD).The COVID-19 disrupted an already fragile care landscape by reducing the desirability of nursing home care and the availability of paid caregivers in the home and by destabilizing family caregiving arrangements.Older adult living with ADRD may be at higher risk for destabilized care and more vulnerable to adverse effects from the COVID-19 pandemic's disruption to the long-term care landscape.This symposium draws on five papers providing qualitative and quantitative evidence of how care arrangements shifted during the COVID-19 pandemic among older adults with ADRD.Patterson and colleagues set the stage for understanding the impacts of the pandemic on family caregiving for older adults with dementia by providing estimates of how many families and households Zainab Toteh Osakwe 1 , Sasha Perez 2 , Michelle Odlum 3 , and Ana Stefancic 4 , 1. Adelphi University, Garden City, New York, United States, 2. Icahn School of Medicine at Mount Sinai, New York City, New York, United States, 3. The George Washington University, Washington, District of Columbia, United States, 4. Columbia University, New York City, New York, United States